Elias’ Thanksgiving

I apologize for not getting any updates up in the past week. There has simply been too much going on to even think about sitting down. The first week we were home it was all about getting everything reorganized for Elias. This past week has been trying to accomplish some unfinished projects we had to abandon the last three months. You know like unpacking still among other things. It has also been difficult to settle into a new routine, but hopefully going forward there will be some opportunities for updates to be posted.

Elias had a wonderful Thanksgiving. Grandma O & Aunt Kelly were up and cooked a wonderful dinner. It was the first time in 18 years we have been able to have Thanksgiving together! That in itself was something to be thankful for. Elias day was stable for the most part, only a few issues here and there, but nothing too overwhelming. It made for a fun and relaxing day for everyone. Elias kept us all entertained through the day. He was having a blast playing, sitting, moving around and some very funny & timely facial expressions. He had us laughing so hard and he was laughing along with us. He was so full of smiles yesterday, it was great to see. We got some great photos that we will put up as soon as we can.

Elias had developed C-Diff while we were in the hospital those final few weeks. This is a GI bacteria issue caused many times by certain antibiotics. This is a very difficult issue to resolve. From what we understand once it is in your system it never goes away. It goes into a remission phase and the spores can be reawakened by various things. The bacteria is so strong that hand sanitizer will not kill it. Guess that is why the bottle says kills 99.9%! Only solid hand scrubbing/washing for several minutes after contact will apparently kill this bacteria. He was being treated for it when we came home with Flagyl, a common drug for this. He had completed that course about 10 days ago. This week we began to notice and increase again in the mucus fistula leakage from his colostomy. It has a very distinct smell that is characteristic to the C-diff. So we know know why that has been leaking so much, no thanks to any doctors we have been asking. It was becoming apparent that this problem was not resolved. We called the FA clinic asking their advice, especially since we are still waiting to get into a local pediatrician. We have an appointment, but it is three weeks out and that was the soonest. They will not see us for “sick visits” until we have had an initial “well visit.” So they ordered a stool culture to confirm what everyone expects to be true, that the C-diff is still active. They came out yesterday to collect the sample and send it to the lab. Yes the home skilled care company sent someone out on Thanksgiving. We were afraid we would have to wait until Monday. We were thankful for that. If the culture is positive then they will start more medication, but probably not flagyl since it apparently was not effective. So we wait, as usual. Elias has also been vomiting a lot more than normal and until yesterday it seemed to occur when we gave him the new antibiotic they switched him to. Since C-diff can cause nausea  we are not sure if it is that or the antibiotic that is making him vomit. We only hope that what ever medicine the choose to place him on for the C-diff clears it up so we can at least eliminate one factor from that mystery. Although, that is the way Elias normally works. One problem, many outcomes!

We were able to get an OT assessment scheduled for this week. Once this is done then we can have another meeting with all his home providers and get all his therapies going again. We can not wait for them to see how far Elias has come in the three months since they saw him last. It should be exciting and fun to get that back into Elias routine. His PT/OT at the hospital also gave us some great suggestions for toys to get Elias that will be fun and age appropriate to play with but also will serve a therapeutic purpose. Things are really flying from the developmental front and it is so amazing to see him do all these wonderful things! Elias is determined to do what he wants to do, when he wants to do it and that is just another one of his amazing qualities. He makes us very proud parents!